Hopeworks Foundation - seeking stories

[Hopeworks Foundation]

I founded this Foundation because I have a brain injury - and for the most part, I have been on this journey on my own. My Dad had MND/ALS and my Mum has four neurological conditions. Navigating the health system and life in general has been a struggle and I wanted others following in our footsteps to have a place where they could find all the information and support that I wish I had had in one place. The Hopeworks site - www.hopeworks.org.nz -  has been designed to be User generated and I hope that you may come forward and share your story and the things that made your life better in the process. Kind regards, Kate ([e-mail])

[Slongo]

There must be untold numbers who walk away from a head injury every day, saying 'I'm OK'.  And then they aren't, but no one knows why. 

I walked away from a car accident at the end of 1976.   I could remember saying I"M OK, over and over.  By the time the headache came on, I had forgotten the blow to my head. 

All I knew was that my emotional life spiraled out of control after that.  Psychologically, I was not OK.  I lost touch with my friends, couldn't keep a job and used men as stepping-stones to cross a void of isolation.  I was struggling to survive the only way I could. 

I made it.  Even with my remaining deficits, I was lucky, very lucky.  I know that now. 

God bless you.

[Slongo]

 The most helpful thing for me was remembering the accident after thirty years.

                                                        

iM ok

 

From the driver side window I see an oncoming shape.  The brake is under my foot.  A blast of impact and a rising wave of crumpling metal carries me weightlessly along its crest.  The car slams to a halt and a deep and sudden silence rings.  I'm OK. 

A deafening blow lands at the crown of my head as my left shoulder follows.  Inside a booming vacuum comes the whisper of a crunch.  The sound is wrapped in unbearable pressure then it is gone in a burst of welcoming light.  I watch from the back of my skull as neon satellites circle and the brightness implodes. 

 I open my eyes to shades of gray.   Plastic-covered dials stare vacantly behind the steering wheel.  My head feels scooped out and raw like a jack-o’-lantern. 

A flash of yellow light as the door clunks open.  Cold air and tumbling voices… “…everyone OK… you hurt… is anyone…you OK?”

“I’m OK,” I breathe.

“Are you hurt?”

“I hit the window,” I say then turn my head to the glass and see it intact.  Unbroken; there is no spider web of cracks though I’d heard the soft sizzle of give.  

“I’m OK.  I just hit my head on the window.”   

Karen. 

I glance right and see her struggling out of a sprawled position.  She is bleeding from her forehead and it smears her face as she wipes it away.

Stupidly, I ask, “You OK?”

“Think so…you?”  

I look to the rear-view mirror.  Nothing remains but the bracket.  A dark spatter of blood crosses the ceiling over Karen's head.   My arms and legs move readily.  No blood.  Nothing loose or useless. .I find the crown of my head tender and numb as if Novocaine was wearing off.   

I’m OK. 

“Yeah, I think so.  I just hit my head on the window.”

Karen composes herself on the seat as her door squeals open. A scarf is pressed against her forehead.  A male voice assures us that an ambulance is on the way as we sit in stunned silence.

The interior of the car feels smaller; is smaller.  The seat is ratcheted forward but crazily twisted backward.  The lower panel of the dashboard is wedged across the foot well, the free end jammed into the passenger floor. 

“I’m getting out,” I say and swivel into the door gap.  I ignore a bystander’s cautioning stay put.  

“I’m OK,” I say as I plant my feet in the street and stand up.

The night is cold and Christmas lights twinkle on street lights and in windows.  Snow clings in yards and on rooftops and rimes the edges of the roads.  

Onlooker’s murmur and their warm breath is snatched by the wind.  Headlights blaze as cars pass slowly.  

My Comet is crumpled with an ugly snarl ripples across the hood.  The left headlight is gone from a gaping socket.  A piebald T-bird, primer spotted like a Paint horse, sits on the road with a smashed front end.  Steam rises and the night air scrubs it away.  Debris covers half of the four-lane roadway.  

Police arrive with red lights swimming in the night.  An ambulance pulls up behind.   

Attendants hurry to us.  Blood pressures and pulses are taken; questions are asked and answered.  Karen needs stitches and something about her knee.  A penlight coaxes my eyes back and forth and fingers wave - how many do you see?  I answer correctly.  

“I'm OK.  I just hit my head on the window."

A headache flares like distant lightning.

The other driver is uninjured and gives his statement to police.  He forgot to turn on the headlights at dusk.  I can’t recall which way I was turning.   The police ask my version.  I didn’t see him.  Witnesses confirm that I failed to yield the right-of-way to oncoming traffic and he was oncoming in darkness.  Failure to use safety belts elicits a check mark on paperwork but little comment from police.  No tickets are issued.  

Buckle up for safety, Buckle up… Keep your seat belts fastened, always buckle up…  Traveling in your car, whether near or far…

Karen has gone.  A rush of adrenaline washes through me as the ambulance rolls away.  The retreating red and white doors. AMBULANCE, spelled out in black capital letters.  Warm exhaust swirls.  

A drum beat joins the dog-whistle ache in my head.   I stand in the cold without continuity or purpose.  A solitary longing as people go about their business.  

A policeman approaches and asks me something.  I nod with relief and gratitude.  

He turns and walks away and then looks right.  The planes of his profile in stark contrast to the darkness. Red, white, red, white.

I can’t recall what he said. 

I exhale and my breath disappears in the night.

[Slongo]

Thanks

[mego]

your site is BEAUTIFUL - more importantly, YOU are beautiful ! I understand how difficult this stuff makes being "on the journey alone" (in a different sense, of course, but even though our letters make up individual sentences, in separate paragraphs - we're still on the same page, or at least a nearby one) ...it doesn't really matter, haa - I just wanted to let you know that you should be very proud of yourself for being such a quality human being. I mean, not only for understanding this stuff, but trying to help out other so they don't have to go through that same mess. Thank you, kate - you're wonderful !

love sincerely,

mego !

[Hopeworks Foundation]

Thank you so much for your story. I was in a car accident too, so relate to what you went through - although I don't think I could recount it as superbly as you have. More than anything, I am glad that you are now ok, and that you have have found a way to piece your life back together and move forward again. That process alone is more monumental than most people realise or appreciate. I am so grateful that you have shared your story - I think it will resonate clearly with other survivors and hopefully shed some light on what the real cost of TBI is. Please stay in touch, its a real pleasure to have you on board :) Kate

Slongo said:

 The most helpful thing for me was remembering the accident after thirty years.

                                                        

iM ok

 

From the driver side window I see an oncoming shape.  The brake is under my foot.  A blast of impact and a rising wave of crumpling metal carries me weightlessly along its crest.  The car slams to a halt and a deep and sudden silence rings.  I'm OK. 

A deafening blow lands at the crown of my head as my left shoulder follows.  Inside a booming vacuum comes the whisper of a crunch.  The sound is wrapped in unbearable pressure then it is gone in a burst of welcoming light.  I watch from the back of my skull as neon satellites circle and the brightness implodes. 

 I open my eyes to shades of gray.   Plastic-covered dials stare vacantly behind the steering wheel.  My head feels scooped out and raw like a jack-o’-lantern. 

A flash of yellow light as the door clunks open.  Cold air and tumbling voices… “…everyone OK… you hurt… is anyone…you OK?”

“I’m OK,” I breathe.

“Are you hurt?”

“I hit the window,” I say then turn my head to the glass and see it intact.  Unbroken; there is no spider web of cracks though I’d heard the soft sizzle of give.  

“I’m OK.  I just hit my head on the window.”   

Karen. 

I glance right and see her struggling out of a sprawled position.  She is bleeding from her forehead and it smears her face as she wipes it away.

Stupidly, I ask, “You OK?”

“Think so…you?”  

I look to the rear-view mirror.  Nothing remains but the bracket.  A dark spatter of blood crosses the ceiling over Karen's head.   My arms and legs move readily.  No blood.  Nothing loose or useless. .I find the crown of my head tender and numb as if Novocaine was wearing off.   

I’m OK. 

“Yeah, I think so.  I just hit my head on the window.”

Karen composes herself on the seat as her door squeals open. A scarf is pressed against her forehead.  A male voice assures us that an ambulance is on the way as we sit in stunned silence.

The interior of the car feels smaller; is smaller.  The seat is ratcheted forward but crazily twisted backward.  The lower panel of the dashboard is wedged across the foot well, the free end jammed into the passenger floor. 

“I’m getting out,” I say and swivel into the door gap.  I ignore a bystander’s cautioning stay put.  

“I’m OK,” I say as I plant my feet in the street and stand up.

The night is cold and Christmas lights twinkle on street lights and in windows.  Snow clings in yards and on rooftops and rimes the edges of the roads.  

Onlooker’s murmur and their warm breath is snatched by the wind.  Headlights blaze as cars pass slowly.  

My Comet is crumpled with an ugly snarl ripples across the hood.  The left headlight is gone from a gaping socket.  A piebald T-bird, primer spotted like a Paint horse, sits on the road with a smashed front end.  Steam rises and the night air scrubs it away.  Debris covers half of the four-lane roadway.  

Police arrive with red lights swimming in the night.  An ambulance pulls up behind.   

Attendants hurry to us.  Blood pressures and pulses are taken; questions are asked and answered.  Karen needs stitches and something about her knee.  A penlight coaxes my eyes back and forth and fingers wave - how many do you see?  I answer correctly.  

“I'm OK.  I just hit my head on the window."

A headache flares like distant lightning.

The other driver is uninjured and gives his statement to police.  He forgot to turn on the headlights at dusk.  I can’t recall which way I was turning.   The police ask my version.  I didn’t see him.  Witnesses confirm that I failed to yield the right-of-way to oncoming traffic and he was oncoming in darkness.  Failure to use safety belts elicits a check mark on paperwork but little comment from police.  No tickets are issued.  

Buckle up for safety, Buckle up… Keep your seat belts fastened, always buckle up…  Traveling in your car, whether near or far…

Karen has gone.  A rush of adrenaline washes through me as the ambulance rolls away.  The retreating red and white doors. AMBULANCE, spelled out in black capital letters.  Warm exhaust swirls.  

A drum beat joins the dog-whistle ache in my head.   I stand in the cold without continuity or purpose.  A solitary longing as people go about their business.  

A policeman approaches and asks me something.  I nod with relief and gratitude.  

He turns and walks away and then looks right.  The planes of his profile in stark contrast to the darkness. Red, white, red, white.

I can’t recall what he said. 

I exhale and my breath disappears in the night.

[Hopeworks Foundation]

You are so sweet :) I am glad you like the site and what I am trying to do. Like you say, every sentence adds to the story and what a story it is!! Brain injury is so unique and individual, and we are all travelling this path together. I love hearing about others' survival and how they got through. I find it so inspiring and courageous. Thanks for all your support. Kate x 

meg-o said:

your site is BEAUTIFUL - more importantly, YOU are beautiful ! I understand how difficult this stuff makes being "on the journey alone" (in a different sense, of course, but even though our letters make up individual sentences, in separate paragraphs - we're still on the same page, or at least a nearby one) ...it doesn't really matter, haa - I just wanted to let you know that you should be very proud of yourself for being such a quality human being. I mean, not only for understanding this stuff, but trying to help out other so they don't have to go through that same mess. Thank you, kate - you're wonderful !

love sincerely,

mego !

[Hopeworks Foundation]

I have begun adding personal stories of survival to my site... starting with those of Slongo and meg-o  

I would love to hear more stories, so if you have a brain injury or know someone who would like to share their story, please let me know. Every voice counts, and at Hopeworks Foundation your voice is truly heard.

[e-mail]

[mego]

uh, naw, I didn't say that + I was only addressing you, from myself (I am not more than one person, brain injury, or not.) nor did I tell you much of any kind of story at all... well, apparently I was just mistaken. I don't know, I am going to refrain from wasting anymore time with all of this constant bs.

[Hopeworks Foundation]

Miscommunication going on perhaps?? I am a little confused.... When I said 'what a story it is" I was referring to living with brain injury and the journey that entails - rather than meaning 'your' story... Likewise I was responding to your comment about Hopeworks "trying to help out other so they don't have to go through that same mess" when I said "Brain injury is so unique and individual, and we are all travelling this path together. I love hearing about others' survival and how they got through. I find it so inspiring and courageous"...Perhaps you thought I was meaning something else???? 

meg-o said:

uh, naw, I didn't say that + I was only addressing you, from myself (I am not more than one person, brain injury, or not.) nor did I tell you much of any kind of story at all... well, apparently I was just mistaken. I don't know, I am going to refrain from wasting anymore time with all of this constant bs.

[Slongo]

Thank you so much. My research tells me that was my " island of clarity", where you know what's going on for awhile before everything slips away.  I've been working on that for about four years, writing, rewriting and pulling each fragmented but suddenly connected memory into a narrative.  It helps me stay sane.  Well, sort of sane.  had a few melt downs, probably more to come, but it's all good.  if I don't stop now, I'll end up writing you a book.  Lost it yesterday, after the excitement of being validated.  brain was spinning. 

Car accidents- they suck alot.  Way to make a come back!

Hopeworks Foundation said:

Thank you so much for your story. I was in a car accident too, so relate to what you went through - although I don't think I could recount it as superbly as you have. More than anything, I am glad that you are now ok, and that you have have found a way to piece your life back together and move forward again. That process alone is more monumental than most people realise or appreciate. I am so grateful that you have shared your story - I think it will resonate clearly with other survivors and hopefully shed some light on what the real cost of TBI is. Please stay in touch, its a real pleasure to have you on board :) Kate